@inbook{5a9b177d32b047e08548415d7e47b4e8,
title = "Autism BrainNet: A network of postmortem brain banks established to facilitate autism research",
abstract = "Autism spectrum disorder (ASD or autism) is a neurodevelopmental condition that affects over 1% of the population worldwide. Developing effective preventions and treatments for autism will depend on understanding the genetic perturbations and underlying neuropathology of the disorder. While evidence from magnetic resonance imaging and other noninvasive techniques points to altered development and organization of the autistic brain, these tools lack the resolution for identifying the cellular and molecular underpinnings of the disorder. Postmortem studies of high-quality human brain tissue currently represent the only viable option to pursuing these types of studies. However, the availability of high-quality ASD brain tissue has been extremely limited. Here we describe the establishment of a privately funded tissue bank, Autism BrainNet, a network of brain collection sites that work in a coordinated fashion to develop an adequate library of human postmortem brain tissues. Autism BrainNet was initiated as a collaboration between the Simons Foundation and Autism Speaks, and is currently funded by the Simons Foundation Autism Research Initiative. Autism BrainNet has collection sites (nodes) in California, Texas, New York, and Massachusetts; an affiliated, international node is located in Oxford, England. All donations to this network become part of a consolidated pool of tissue that is distributed to qualified investigators worldwide to carry out autism research. An essential component of this program is a widespread outreach program that highlights the need for postmortem brain donations to families affected by autism, led by the Autism Science Foundation. Challenges include an outreach campaign that deals with a disorder beginning in early childhood, collecting an adequate number of donations to deal with the high level of biologic heterogeneity of autism, and preparing this limited resource for optimal distribution to the greatest number of investigators.",
keywords = "autism spectrum disorder, brain, donation, neurodevelopment, outreach, pediatric",
author = "Amaral, {David G.} and Anderson, {Matthew P.} and Olaf Ansorge and Steven Chance and Carolyn Hare and Hof, {Patrick R.} and Melissa Miller and Ikue Nagakura and Jane Pickett and Cynthia Schumann and Carol Tamminga",
note = "Funding Information: There is widespread appreciation that a complete understanding of the biology of ASD will necessitate, among other things, intensive analysis of postmortem brain material. This perspective has been endorsed by parent advocacy groups such as the National Alliance for Autism Research, Cure Autism Now, and the Autism Society of America. Initial efforts by these groups and NIH grant support (1999–2006) were sustained by Autism Speaks and now by the Simons Foundation. Autism BrainNet has established a collaborative network of university-based sites that share the common goal of generating a library of postmortem brain material that is sufficiently large to support modern genetic and neuropathologic studies. All of the authors of this paper have contributed to the establishment of Autism BrainNet and continue to participate in ongoing discussions to chart an efficient, effective, and family-friendly campaign to solicit donations to achieve this goal. We are extremely thankful to the many families who have helped to shape our strategy or made a donation to this program thus far and to those who are considering making a donation in the future. Publisher Copyright: {\textcopyright} 2018 Elsevier B.V.",
year = "2018",
doi = "10.1016/B978-0-444-63639-3.00003-7",
language = "English",
series = "Handbook of Clinical Neurology",
publisher = "Elsevier B.V.",
pages = "31--39",
booktitle = "Handbook of Clinical Neurology",
}